Supporting parents of youths with intellectual disabilities and psychopathology

Background Parents of children and adolescents with both intellectual disabilities (ID) and psychopathology often experience high levels of parenting stress. To support these parents, information is required regarding the types of support they need and whether their needs are met. Method In a sample of 745 youths (aged 10–24 years) with moderate to borderline ID, 289 parents perceived emotional and/or behavioural problems in their child. They were asked about their needs for support and whether these needs were met. Logistic regression analysis revealed the variables associated with both needing and receiving specific types of support. In addition, we asked those parents who had refrained from seeking support about their reasons. Results Most parents (88.2%) needed some supports, especially a friendly ear, respite care, child mental health care and information. Parents who perceived both emotional and behavioural problems in their child needed support the most. In addition, parents whose child had any of these problems before the past year, who worried most about their child and suffered from psychopathology themselves, more often needed support. Parents of children with moderate ID or physical problems especially needed ‘relief care’, that is, respite care, activities for the child and practical/material help. The need for a friendly ear was met most often (75.3%), whereas the need for parental counselling was met least often (35.5%). Not receiving support despite having a need for it was primarily related to the level of need. Parents who indicated to have a stronger need for support received support more often than parents who had a relatively low need for support. The parents’ main reasons for not seeking support concerned their evaluation of their child’s problems (not so serious or temporary), not knowing where to find support or wanting to solve the problems themselves first. Conclusions Most parents had various support needs that were frequently unmet. Service providers should especially aim at providing information, activities, child mental health care and parental counselling. Furthermore, parents need to be informed about where and how they can obtain what kind of support. A case manager can be of help in this.     

Family developmental risk factors among adolescents with disabilities and children of parents with disabilities

This paper investigates how the learning environments and family dynamics differ if households have a child with a disability or a parent with a disability. Using data from the National Longitudinal Survey of Youth 1997, results indicate that children with disabilities experience similar learning environments as other children, but have somewhat weaker relationships with their parents. In two-parent families, maternal disability lowers parents' school involvement and is associated with a less enriching home environment. Paternal disability reduces maternal monitoring and positive family activities possibly because mothers divert care-giving resources from their children to their male partners. Children in mother-headed households experience learning environments and family dynamics that are similar regardless of their own disability status or that of their mothers, but these outcomes are markedly inferior to those of children growing up in two-parent households. Future research on adolescent development should consider the disability status of children and parents, with particular attention to patterns of gendered care-giving in American families.     

Personality, coping style and well-being of parents rearing children with developmental disabilities

Background Parents with children with developmental disabilities (DD) encounter a variety of stressors associated with rearing their children and must develop effective coping mechanisms in order to adapt successfully to these challenges. Previous research has failed to establish the role of parental individual differences in the reported use of different coping strategies. The current study explores parental personality and whether children with DD were adopted or born into the families and their influence on the coping strategies used by mothers and fathers. Methods A total of 97 mother–father dyads rearing at least one child with DD were participants. They narrated stressful situations related to their child and completed the Ways of Coping Questionnaire twice. Data were also collected with regard to personality, depression and subjective well‐being (SWB). Results Both adoptive and birth mothers and fathers used more problem‐focused than emotion‐focused strategies. Personality factors, Neuroticism especially, were predictive of coping strategy use. Higher levels of Positive Reappraisal were associated with higher levels of SWB, whereas higher levels of Escape‐Avoidance were associated with lower levels of SWB, but only for mothers. Results were consistent with a dispositional model of strategy use in that frequency of use was associated with personality characteristics, was consistent over time, and for different children in the same families. Future research should focus on the persistence of the associations between strategy use and well‐being and whether they hold true at different stages of the lifespan when coping contexts may change quite dramatically.     

Superiority of group counseling to individual coaching for parents of children with learning disabilities

Abstract

Two interventions for parents of children with learning disabilities (LD)—individual coaching and group counseling—were compared. Participants were 169 parents, non-randomly assigned to three experimental conditions: coaching (n=45), group counseling (n=93) and control (n=31). Variables included outcomes (parental stress and parental coping), personal (perceived social support) and process (bonding with therapist/group). Findings indicated more favorable outcomes for parents in both treatment conditions compared to control, more favorable outcomes on the stress index for parents treated in groups compared to individual coaching, and bonding was the most consistent predictor of outcomes. The discussion focuses on the power of group counseling for parents of children with LD.     

Parental work: an account of the day-to-day activities of parents of adults with learning disabilities

The parental role can be an enduring one for many people with sons or daughters with learning disabilities. Despite this, there has been little research on parents’ experiences during their offspring's adult years. The present paper examines the different dimensions of work undertaken by parents in the care of their adult offspring and how they felt these had changed over the years. The paper also explores how parents seek to combine parental work with other aspects of their lives. Data for this study were derived from a qualitative, in-depth study of the experiences of parents of 33 coresident adult offspring with learning disabilities. The data suggest that the long-term nature of parenting involves both stability and change. For example, some parents had experienced a depletion of physical resources and enthusiasm that made it difficult for them to carry out some aspects of parental work. Parents had also met new difficulties, such as the handling of the disclosure of learning disability to their offspring, as well as to members of the public. For all parents, parenting had remained an extensive involvement, so that they still found it difficult to meet the demands of parenting, and their own non-parental tasks and interests. The data also indicate that service intervention needs to be based on an appreciation of the temporal and personal difficulties in parents’ lives, and that service intervention can add to the perceived burden of carers without such an appreciation.     

Socio-economic position, household composition, health status and indicators of the well-being of mothers of children with and without intellectual disabilities

Background Many previous studies have reported that mothers of children with intellectual disabilities (IDs) are more likely to show signs of psychological distress and have lower well‐being than mothers of ‘typically developing’ children. Our aim was to estimate the extent to which these differences may be accounted for by between‐group differences in socio‐economic position. Methods This study involved secondary analysis of happiness, self‐esteem and self‐efficacy variables in a nationally representative sample of 6954 British mothers with dependent children under the age of 17 years, 514 of whom were supporting a child with an ID. Results Mothers of children with IDs reported lower levels of happiness, self‐esteem and self‐efficacy than mothers of children without IDs. Statistically controlling for differences in socio‐economic position, household composition and maternal characteristics fully accounted for the between‐group differences in maternal happiness, and accounted for over 50% of the elevated risk for poorer self‐esteem and self‐efficacy. Conclusions A socially and statistically significant proportion of the increased risk of poorer well‐being among mothers of children with IDs may be attributed to their increased risk of socio‐economic disadvantage.     

Prevalence of parents with intellectual disability in Australia

Background Parenting by people with intellectual disability is attracting increasing attention, and policymakers and service providers require empirical evidence to develop sound policy and service responses. The purpose of the study was to identify prevalence and demographic data on parents with ID in Australia compared with parents with other disabilities and the population of parents without disability.

Method The Survey of Disability, Ageing and Carers, 2009, was identified as the most suitable survey, and design-weighted analysis was performed.

Results An estimated 0.41% of Australian parents had intellectual disability, equating to 17,000 parents with ID. Parents with ID were more likely to have only 1 child and to reside outside a capital city compared with parents without disability.

Conclusions These findings provide benchmark data for monitoring, over time, the prevalence of parents with ID and point to policy and service responses for parents with only 1 child and for those in outer urban, regional, and rural areas of Australia.     

The effects of a home-based intervention for young children with intellectual disabilities in Vietnam

Background   This study was conducted to examine the impact of a 1-year intervention for children with intellectual disabilities (ID) in Vietnam.
Method   Subjects were 30 preschool-aged children with ID (ages 3 to 6 years). Sixteen were assigned to an intervention group and 14 to a control group. Based on the Portage Curriculum ( CESA 5 2003 ), the intervention trained parents to work with their children through modelling and coaching by teachers during weekly home visits.
Results   Comparison of pre-, mid- and post-intervention assessments of the children based on the Vineland Adaptive Behavior Scales ( Sparrow et al. 1984a ) indicated that the intervention was promising: children in the intervention group improved significantly in most domains of adaptive behaviours, and also performed significantly better than the control group in the areas of personal care and motor skills.
Conclusions   The results from the Vietnam programme are discussed in terms of its implications and strategies for developing programmes for children with disabilities in developing countries.     

Socioeconomic and psychological variables as risk and protective factors for parental well-being in families of children with intellectual disabilities

Background The first aim of the present study was to estimate the extent to which differences in well‐being in parents of children with and without intellectual disability (ID) in Sweden can be accounted for by differences in the presence of the risk factors: (1) child disability; (2) socioeconomic disadvantage; (3) household composition; and (4) parental characteristics. The second aim was concerned with individual variation in well‐being within the group of parents of children with ID. The aim was to estimate if protective factors such as parental personality characteristics (sense of coherence), perceived positive impact of the child and satisfaction with participation in different arenas of life explained variation in well‐being in mothers and fathers of children with ID over and above that explained by the risk factors. Method Parents of children with ID (62 mothers and 49 fathers) and control children (183 mothers and 141 fathers) completed postal surveys on well‐being, socioeconomic situation, health, sense of coherence, satisfaction with participation in different arenas of life and the child's impact on the family. Results The results showed that mothers of children with ID had lower levels of well‐being than fathers and control parents, but the presence of a child with ID did not in itself predict poorer maternal well‐being. Rather, differences in economic hardship and self‐rated health were the strongest predictors for well‐being. It was further found that 67.7% of the mothers of children with ID scored within the high well‐being group. The predictive power of the model increased significantly for both fathers and mothers when protective factors were added to the model (42 and 78% explained variance compared with 25% with only risk factors). Conclusions Well‐being of parents with a child with ID is dependent upon the interplay of risk and protective factors and research needs to address these variables simultaneously.     

The maintenance effect of cognitive-behavioural treatment groups for the Chinese parents of children with intellectual disabilities in Melbourne, Australia: a 6-month follow-up study

Background Caring for a child with intellectual disability can be stressful. No data on the longer‐term effects of cognitive–behavioural treatment (CBT) on parents from a Chinese‐speaking background who have children with intellectual disabilities are available in the literature. This study attempted to fill this research gap by examining the maintenance effect of CBT among the Chinese parents of such children in Melbourne, Australia. Method Thirty‐nine participants took part in our CBT groups and attended follow‐up meetings. A questionnaire comprising four instruments, the Parenting Stress Index (PS) – Parent Domain, General Health Questionnaire‐12 (GHQ‐12), Abbreviated Quality of Life Enjoyment and Satisfaction Questionnaire (Q‐LES‐Q‐18) and Dysfunctional Attitude Scale (DAS), was administered to the participants at the pre‐ and post‐test stage and at the 6‐month follow‐up. Results One‐way repeated‐measures analyses of variance revealed significant time and group effects in the PS (F_2,27 = 16.93, P < 0.001), Q‐LES‐Q‐18 (F_2,27 = 15.98, P < 0.001), GHQ‐12 (F_2,27 = 81.93, P < 0.001) and DAS (F_2,27 = 15.50, P < 0.001) scores at the three measurement times. The participants continued to maintain significant improvements in mental health and quality of life and declines in the severity of parenting stress and dysfunctional attitudes at the 6‐month follow‐up. Effect size analyses revealed mostly large differences in the foregoing measurements (Cohen's d = 0.76–2.18) between the pre‐test and 6‐month follow‐up. Employing a cut‐off score of 3/4 in the GHQ‐12 to identify at‐risk and not‐at‐risk cases, approximately 90.5% of the participants could be classified as not‐at‐risk at the follow‐up. Lastly, regression analyses showed that changes in DAS scores significantly predicted changes in the GHQ‐12 and Q‐LES‐Q‐18 scores at the follow‐up. Conclusions This study provides preliminary evidence of the 6‐month maintenance effect of CBT groups for the Melbourne‐resident Chinese parents of children with intellectual disabilities.     

The developmental health of children of parents with intellectual disabilities: Cross sectional study

In a representative population-based sample of 46,025 families caring for a young child, parental intellectual disability (identified in 588 families) was associated with increased risk of child developmental delay, child speech and language problems, child behaviour problems and frequent child accidents and injuries. Parental intellectual disability was also associated with increased risk of exposure to a wide range of environmental adversities such as poverty, poor housing and social isolation. Adjusting for between-group differences in exposure to low socio-economic position reduced the risk of adverse child outcomes by over 50% on each of the four measures of child developmental health. In the final fully adjusted model parental intellectual disability was associated with increased risk of child developmental delay and child speech and language problems. However, there were no significant associations between parental intellectual disability and child behaviour problems or frequent accidents and injuries.     

The contribution of marital quality to the well-being of parents of children with developmental disabilities

Background This study examines the contribution of the marital relationship to the well‐being of both mothers and fathers of children with developmental disabilities. Parent well‐being is conceptualized in terms of mental health, parenting stress and parenting efficacy. Methods These analyses are based on data from 67 families participating in the Early Intervention Collaborative Study, an ongoing longitudinal investigation of the development of children with disabilities and the adaptation of their families. Multidimensional assessment techniques were used to collect data from married mothers and fathers and their child with a disability. Mother and father data were analysed separately using parallel hierarchical regression models. Results For both mothers and fathers, greater marital quality predicted lower parenting stress and fewer depressive symptoms above and beyond socio‐economic status, child characteristics and social support. In relation to parenting efficacy, marital quality added significant unique variance for mothers but not for fathers. For fathers, greater social support predicted increased parenting efficacy. Child behaviour was also a powerful predictor of parental well‐being for both mothers and fathers. Conclusion The findings support the importance of the marital relationship to parental well‐being and illustrate the value of including fathers in studies of children with developmental disabilities.     

The effectiveness of the Training and Support Program for parents of children with disabilities: a randomized controlled trial

OBJECTIVE: The Training and Support Program (TSP) was designed to equip parents of children with disabilities with a simple massage skill for use with their children in the home environment. The effectiveness of the TSP was examined in a randomized controlled trial with a wait-list control group. METHODS: Parents were trained in massage by suitably qualified therapists in eight weekly sessions, each lasting 1 h. The sample comprised 188 parents who were randomized to an intervention group (n=95), who attended the TSP with their children immediately, or a control group (n=93), who were offered the TSP after 4 months of follow-up. Data were collected by self-administered questionnaires at baseline and at 4-month follow-up. RESULTS: The majority of participants were mothers (88%), with a partner (88%), and White European (82%); 40% worked full-time or part-time, and 34% had health problems (e.g., chronic fatigue, cancer, and arthritis). The TSP demonstrated statistically significant positive effects on parental self-efficacy (PSE) for managing children's psychosocial well-being and depressed mood (0.004 and 0.007). There were trends toward improvement on parental satisfaction with life (P=.053), global health (P=.065), and parental ratings of children's sleeping (P=.074) and mobility (P=.012). Effect sizes were small (0.11-0.23). Levels of anxiety, depression, and perceived stress were all higher than published norms. CONCLUSION: The TSP is an effective means of improving PSE and depressed mood. Additional means of supporting parents need to be investigated.